New Seizures=More Tests

Everything is crazy around here! Sierra has developed two new seizure types in the last year. She now has tonic clonic (grand mal) and drop (myoclonic) seizures. We were able to get a neuro-psych evaluation done, a genetic panel, and finally meet with an epilepsy specialist. Not only does Sierra have epilepsy, but she also has ADHD, ODD (oppositional defiance disorder), and Sensory Integration and Processing Disorder. ODD basically is attached to ADHD and makes her have major issues with authority; it also makes things very interesting!

The new specialist that we are seeing believes that it is possible Sierra has intractable epilepsy. This means that the seizures can’t be fully controlled by medicine. We have luckily been able to keep her on the same medication this last year, but we are constantly having to change the dosage or add/subtract additional medication. In the last year and a half we have changed the dosage 5 times, added other medications, and then taken them away. The problem is that she has barely grown in that time, in fact she has been losing weight in the last 6 months, so the changes weren’t due to her outgrowing the dosage.

We have new tests coming up this month!  In fact she has a 3-day Video EEG next week and a sedated MRI in two weeks. After the results will be a new medicine change. We have only done the 24-hr Video EEG and have never done the MRI so this will be new for us. I am lucky that Sierra is a trouper when it comes to doctor visits and hospital stays!

TIPS for EEG Hospital Stays!

  • Palmolive with Oxy dish soap *
  • Hair conditioner *
  • Fine-tooth comb *
  • Button-up top
  • Pajama pants
  • Slippers or no-slip socks
  • Books/Movies/Crayons and Coloring Books/iPad or tablet
  • Snacks
  • Clothes to go home

*For getting the EEG glue out of the hair!

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About Sierra's Story - Epilepsy through the years

My daughter, Sierra, was diagnosed at age 4 with Primary Generalized Epilepsy - absence seizures. Since her diagnosis she has developed tonic clonic and drop seizures. She has also been diagnosed with ADHD, ODD, and Sensory Integration and Processing Disorder. This is Sierra's story.

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